Dating at 59 really sucks

Well, it happened again. I got stood up. There I was, on time, looking really sharp in a classic black dress and a red hat, complete with seamed hose, heels, pearls, and a slick of Dior lipstick. I even wore my favorite perfume. 

I spent two hours getting a string of excuses and '15 minutes, really'. The bartender didn't charge me for the terrible cup of coffee.

What about me says 'Don't bother to show up'?

I'm worth better than this. I'm worth dressing nicely for, even if casually, being clean and on time. I'm worth courtesy. I'm worth adult behaviour.

This sucks. It seems all the good ones are taken.

I keep trying because I hate being alone. I don't want to do stuff alone. I don't want to spend all of my evenings with Mr Laptop.

If you know a single man who is worth my time, send him my way!

I made the mistake of flying Delta. Not a mistake I'll make again.

 

My Delta nightmare-

To start- I’ve not heard good things about Delta- EVER. I only flew Delta because I was going to my best friend’s funeral, and had to find the least expensive ticket. After this experience, I will NEVER fly with Delta again.

Beginning with my flight out on Thursday, July 21, 2022, flight 396 from PDX to JFK.

*I am having mobility issues due to a back injury and severe pain. I called ahead to customer service to arrange a wheelchair, as well as arranging for it online. I was told that I could check in at the curb baggage check and get one there. There was no one at the curb when I arrived, I could not get there attention of the desk staff to simply ask the question of where to go for one. I tried to walk to my gate anyway, when someone noted me struggling and flagged down an airport employee to get me some help. I then got parked at the gate in a chair that was not a wheelchair but an adult-sized stroller that had to be pushed- I couldn’t move it only my own, hence couldn’t even go get a cup of coffee- I was stuck sitting at the gate until my flight left.

*I have NEVER been in a more uncomfortable airplane seat. It was miniscule. The seats are the very opposite of good ergonomic design, and my back hurt so much worse after sitting in one. There’s extremely limited leg room. I know coach is tight, but I am only 5’4”, and my knees were touching the back of the seat in front of me. I pulled a tape measure from my purse and found that between the edge of my seat and the back of the seat ahead of me was all of 9” of clearance. That explained why it was so difficult to get in and out of the seat. And it was even worse when the man in front of me decided to recline his seat. I tried to use my laptop, but the space was so tight, I could only open it about 45 degrees, and because of that, it kept switching itself off.

*I had the misfortune to be hungry (because I was stuck at the gate instead of being able to wheel myself to find food), and the tiny bag of SunChips (gag) were not enough, so I paid $12 dollars for the most wretched sandwich I’ve ever had. It was allegedly chicken salad, on a soggy croissant, and filled with arugula, which is definitely an acquired taste. (It tastes absolutely vile to me.)

*The flight was delayed about 45 minutes, which caused problems for the friends picking me up at JFK. Especially since…

*The woman who got me off of the plane in the stroller didn’t take me to Arrivals- she took me to Departures, and left me there and walked off. I had no idea where I was, and couldn’t tell my friends where I was so they could find me, making the delay there even worse.

Sunday, July 24^th, I flew home from JFK to PDX, on flight 2656.

*Again, I double-checked that there would be a chair available for me. There was not. While I was getting out of the car, my friend went to the curb check agents and explained that I was supposed to have had a chair waiting for me. They blew him off completely, saying they didn’t know anything about a wheelchair. By this time, I was exhausted and in tears. My friend went in with me, grabbed a random wheelchair from another airline, and badgered people until someone got a Delta employee to put me in an adult stroller and wheel me to my gate. And there, he left me sitting in a seat and walked off with the chair.

*I managed to limp to the desk, told the gate agent that I was supposed to have a wheelchair to get on the plane. She said she’d call for someone. She may have done it online, but I didn’t see either gate agent call anyone. At any rate, no one came. Everyone else boarded, and I was like ‘Hey, I’m still here!’ Finally, another employee got tired of waiting and pushed me down to the plane herself. TO the plane, but didn’t help me board or with the carry on. Other passengers did that. (Why are your passengers doing your jobs?) I got to board DEAD LAST.

*Seat was, again, tiny.

*The wifi kept cutting out or something on my phone, so I got out my laptop, only to find that I had to PAY FOR the wifi that I’d understood was free. And it kept dropping me, and I had to keep re-signing in. And when my battery was down, I switched back to the phone, which still couldn’t keep the connection. So I had no way to tell my roommate that we were going to be late.

*The media screen in the seat back was not working. The flight staff was like ‘Not our problem’. With phone and laptop not options, I mostly looked at the back of the seat in front of me. I had a book with me, but there was not enough room to hold it comfortably.

*Again, I’d been stuck at gate, in a stroller, with no way to get food, so I have to pay for a disgusting, overpriced sandwich and two very thin apple slices. It was pathetic, but my blood sugar was crashing.

*Oh- and the carpet in the aisle was filthy.

Delta is #1- for customer complaints. I can see why. For an airline that’s been around as long as Delta has, you’d think it was better at basic competence. Seems I was wrong. But I’m mad, and intend to spread the word.

A long goodbye

Today, we said goodbye to one of the best friends I've ever had.

Phil Troy was a man who I owe a life-debt to, who rescued my daughter Anne-Marie when her best-laid plans crumbled. And he helped her get on her feet in the Big City, where she'd gone to 'seek her fortune', like in the fairy tales. He and Susan adopted her as their own. I never could thank them enough.

But it wasn't just rescuing my daughter. In the 20-odd years that I knew him, he was a huge support, not just as an artist, scholar, and cook, but as a brother who would tell me the hard truth when I needed to hear it.

One time things were getting heated on my Facebook page, and my own father said some terrible things to and about me, and Phil waded out of the fray and said "Who is this asshole and why do you let him talk to you this way?" When I explained that it was my dad, Phil said "Laura, how old are you?" Lighted dawned. I was 46. And I realized I didn't have to put up with the abuse anymore.

Through the last few years of my relationship with James, Phil tried to talk some sense into me, to see how toxic it had become. I couldn't see it then. But when James broke thing off, Phil didn't say 'I told you so', but gave me more comfort than I had any reason to expect. 

He was a man who could take the business to another highly respected cook, and tell him he was an idiot without using those words (in fact, in a much more amusing way for those of us who were watching in awe as the two of them battled), and do it with good humor. He also cared for tiny frogs and a peach-faced lovebird as though they were his children. And he cherished his wife and son more than his own life.

I'm still having trouble believing he's gone. On the other hand, the cancer had ravaged him to the extent that dying was a blessing. I just wish that he'd seen Anne-Marie's elevation, and to meet Sam.

Phil, my beloved friend, I will always love you, and there will always be a Ralph Kramden-shaped hole in my life. Adieu, dear fellow.

 

Argh! To sleep, perchance to- dang it, that lead popped off again...

 

So, I had another sleep study last night. Or a 'you've got to be kidding me' study. Who can sleep with all of those wires all over?

 

 

 

Yeah, that's roughly what I looked like.Well, with a headful of electrodes, too-

 

 

 

And add an assortment on wires for EKG (and I'm allergic to the glue on the pads for those), a cannula on my nose and more monitors... 

Bed was lumpy, sheets were scratchy, room was cold. I didn't sleep well, kept waking up, my back hurt a LOT, and one of the leads on my legs kept coming loose, so the tech had to come in and clip it back on. Apparently I was talking in my sleep, which is unusual for me. And not just talking- teaching in my sleep! (Father Abelard rides again!) And the tech said I was singing at one point. Very, very weird.

 

Came home, smeared four coconuts worth of coconut oil into my hair, to get the out from the EEG leads out. Took about 40 minutes in the shower to get my hair presentable. (It is still not happy.) And then I went back to bed. And slept. A LOT.

Hopefully tomorrow I'll get done what I intended to do today.After I've had some sleep at least...

A foolish little girl- and another spider!

And another try! Storytime!

Just a test... go on with what you were doing...

Just a test- a couple of stories for the grandkids...

And still, life goes on.

I get brief moments, like the one at left, sitting in the hallway at Twelfth Night, where it suddenly all comes together, the clouds part, and rays of light strike me...

Or Miriam gets a good photo of me. :-)


I've been working at trying to be busy, trying to see friends, and do stuff that gets me out of the house. Trying not to mope. Telling myself that I can get over this, and then it won't hurt so much.

Lies never hurt so much as when they're to yourself.

I finally realized a couple of weeks ago that no, I'm not ok. Yeah, I've hit that point where I'm angry, but it's like I'm still bleeding inside, and no amount of band-aid will fix that, even if they are Avengers band-aids.

I think of all of it, the initial shock, bereavement, and sense of betrayal- all of it pales in comparison to that huge, gaping hole in the middle of my life: I've lost my best friend. I no longer have that every day or two talk, the chance to sill emotions, to share things I've seen or thought, to complain, to express worry and say "What do I do? I don't know what to do!" The impulse, dozens of times a day, to share something with him, keeps the wound raw and oozing.

So I talked with Rebecca, and we're going to up my anti-depressant, just a bit, just to get me over the hump. Hopefully spring will help too.

However, my lungs are doing unhappy things again, and I'm back on prednisone. And hoping that Dr Fraley can get this under control before it gets worse. Lung stuff can be terrifying.

Here's to hoping that April is better.

Better late than...

Has anyone else noticed how the wheels sort of fell off their lives, oh, in early November, 2016?

Yeah, I realize it's been two and a half years since I posted. Things have been happening.

And for good measure, here is a couple of photos of Sam, last summer!

He is absolutely adorable. :-D And a very sweet boy!

The girls are growing too! Would you believe 2nd grade?

And Annie is fighting heavy! And doing very well!

And me? I'm...

Well, it's been mostly bad news. First, St Matthew's closed. We were losing attendees and $ since 2013, and the last year or so made it pretty obvious. We had our last Sunday service in October of 2017, and a celebration with cake and all that November. But the work was far from done. I was Senior Warden (sort of the board chairman), and ended up doing most of the work, which was sort of a combination of coroner and executor. It was horrible. And it took months. But it was close properly and in as orderly a fashion as I could.

My health has continued badly. In 2 years, I've been hospitalized 4 times and had 2 surgeries. Spent some time in a hellhole rehab place (no really- I talked to my OHP caseworker about it, and they ended up taking them off the list of rehab places that OHP will pay for.). The fibro has gotten really bad, and I'm having some serious issues with my back. Finally got a referral to the pain center at OHSU. I'm still wending my way through referrals and such, but I'm hoping that they can do something to take the edge off.

Is anything else seriously stressing me out? Well...

In November, just before my birthday, James announced that he was done, and ended our relationship. It had been 19 years. THIS WAS NOT MY CHOICE. We were having communication difficulties, and I was trying my damnedest to figure out how to solve them. I suggested quite a number of times that we see a counselor, get some translation, try to get on with life. Apparently this was not De Plan in his eyes. So it was BANG! and I'm completely cut off. I don't even know how to live life without him. I've been part of Us for so long, and looked forward to growing older with him, and now I have a gaping hole that I can't even begin to fill, because I can't see the bottom yet.

I'm getting support from family and friends, but it kinda doesn't fix it.

So this is me, 54, and single on Valentine's Day.

Will update again soon...

Much life is happening, and I'm always several step behind, as usual. But I will be back with updates soon!

In the meantime, here's a picture of Sam!

Back in the saddle again...

Well, I find that I haven’t updated this blog in a year now. I really have no excuse- it is my home page, so I see it often. Sometimes I look at it and feel guuuuuuilt about not updating...

In my defense, I’ve had a really rough year. January of 2015 I somehow ruptured a disc in my neck, and I’ve been in a great deal of pain from that. It took more than 8 months to get OHP to approve physical therapy for it. It helped some, and I got some range of motion back in my arm, but the pain is still there. So I have a constant level of grey over me from that.

In April, 2015, I fell down the stairs at church. It looked as though I broke my leg- it was really, really bad. The staff in ER sent off to orthopedics to get ready to set it. Then the x-rays came back. It wasn’t broken after all- but I had a massive periosteal hematoma. I was in a boot for six weeks (missed Egils because of it), and I still have a really ugly mark on my leg, and a big dent. That was not fun.

Also in April, I had my hair cut. A blunt cut, jaw length, and my natural curl makes it pretty cute. And on Sundays, all I have to do is touch it up with the curling iron, and it is fabulous. I got a bunch of fake hair for SCA events, and that looks nice.

I had kind of come to terms with the pain issues on top of the fibromyalgia, when the doctor sent me for a sleep study, because I was having symptoms that might be narcolepsy. So we did the long study- overnight, and then daytime naps. They didn’t find any obstruction or apnea. But they did find that for some odd reason, my oxygen drops when I’m asleep- like, nearly 15 points. So now I'm on supplemental oxygen at night.

So several tests and doctors later- including a lung biopsy, they determined that i have sarcoidosis. It’s another auto-immune disease (as though fibromyalgia wasn’t enough), and they started me on steroids.

Ten weeks later, I was 25 pounds heavier, stretch marks all over (a new thing for me- I didn’t even get them when I was pregnant!), and highly volatile. We took me off of them, and put me on a different drug (which is making my hair fall out).

Some time around Halloween or Thanksgiving or so, I started having headaches. Really bad ones. Different from anything I’ve ever had. Really bad in the morning, and late at night. Enough to make my vision a bit low. And I’ve developed tinnitus, really bad. It’s 24/7, and pretty loud. And I’ve lost some hearing in the right ear.

After several doctors, a CT scan, and an MRI, they think I have Idiopathic Intercranial Hypertension, also known as Pseudotumor Cerebri. We’re still trying to get me in to Neurology (more OHP fu). Next step is likely a spinal tap.

My life just keeps getting harder and harder. And I feel like it’s shrinking, and I’m losing more and more, until now all I have is my computer and my books.
There are some bright spots though. David has been here for a little more than a year, and just before Christmas, Lydia and the girls came up to join him. They weren’t doing well without Daddy. They’re staying in the basement, and it’s not ideal, but they’re together. He has a (hopefully temporary) job right now, but the pay is just above minimum, and they can’t get an apartment on that. He’s putting in a lot of applications, so hopefully something will come up soon.

The girls are a hoot though. We have artwork all over, and they go to the park a lot, and they watch They Might Be Giants kids’ videos on my computer. I introduced them to Harry Potter, so they watch that too. The first two movies, that is. The third and past that are too scary, and we think they’d have nightmares. I made them nice sturdy wands a couple of weeks ago, so now the adults in the house have to pretend to be petrified or fall down or whatever. I got the a planet mobile that is nearly put together- the planets had to be painted, which was messy, but fun.

Politics has me pretty freaked out right now. Trump scares me- a lot. And his supporters even more so. The violence at his events is terrifying. Currently I’m supporting Bernie, but if Hillary wins the nomination, I’ll support her. I’d vote for a yellow dog over any of the current GOP offerings.

Well, this should do for now. Hopefully, I won’t wait another year before updating again!

My answer to prejudice.

So I have something to get off my chest.
It's my observation that it is a lot easier to fear and even vilify something and someone if you don't know them. Most of the fear of the dark closet at night is the unknown. When you don't know what might jump out and getcha, you're more likely to hang on to something to strike back with.

I grew up mostly in small town, and then rural area. There weren't any minorities, except for one Native American family at my middle school. I'm not sure that I'd even met a black person until my Aunt Verva married a man who was part black. There were a handful of Asian kids at my high school, remnants of the Japanese families who farmed in the valley. For the most part, I went to lily white schools. The year I spent in Hawaii was a complete shock in many ways. Suddenly there were all these people from all sorts of ethnic backgrounds, and I found that, well, they were just _people_ Humans. Like me.

I never knowingly met any gay people. There were a couple of kids who were 'different' (and one that I knew was gay, how, I don't know, but I knew. He's here on my FB and I love him dearly), and lots of talk went around, but given how often 'gay' was used just as an epithet, I have no real idea if any of them actually were gay.

In the churches I attended, fire and brimstone coated any talk about gays. When I was a kid, I had no idea what or who a homosexual was, but apparently it was BAD, and I should shun them. As an adult it was even worse. Through the 80s, and especially after AIDS became a 'thing' (no thanks to the Reagan administration to trying to hide it for so long), the screaming about the horrible gays hand how they wanted to destroy us all and convert our children, etc et etc got even louder. I was terrified of the gays, and revolted by them.

And then something changed. I found the SCA.

It was a bit like moving to Hawaii, in that suddenly I was in an environment were there were gay people, they were 'out' but not obnoxious, and I got to know them. And found that they were _people_. Humans. Just like me. They didn't have horns and tails. They didn't grab my kids and try to make them gay. They didn't break up my marriage (that fell apart on its own, thank you). They were decent people, just as hardworking as anyone else. They had homes, and jobs, and families. And as I got to know them and befriend them, I found that I wasn't afraid of them. I was no longer revolted. And I learned to love them as I loved the others around me. Several of them are here. (Hi! )

Later, I joined the Episcopal Church and found gays in my parish, and in church leadership. They came to worship with the rest of us. They sought to serve and to share in parish life. And they were seeking God the same as I was.

How could I possibly push them aside? Were they not my brothers and sisters?

I'm not afraid of an 'agenda'. Like someone told me, the gay agenda is not taking over our country and converting everyone. They gay agenda is more like "Pick up dry cleaning. Grocery- milk, garlic, hamburger. Do taxes. Fix leak in bathroom sink." No grand conspiracy. They just want lives like the rest of us.

I think that some demystification on a grand scale needs to happen. People need to SEE and know the gays around them, need to see them as _people_, as humans. Need to lose that fear- the fear that leads to terrible actions like the bill in Indiana.

And I think the same of race and religion. We need to meet and learn from people of other races and ethnicities. We need to befriend and learn to care about people from of other religious backgrounds- not to convert them, but to respect them.

None of this will change until we do so.

(My rant about uninvolved, complacent voters is for another day.)

If it weren't for bad luck, I'd have no luck at all...

Well, this winter is being difficult. Not the weather so much- that hasn't been too bad. But life has been very difficult.

First, ZIPPY DIED. I was really distraught, but there was nothing to do about it. We took her in because the front end was acting really weird. Turned out that the main bar that holds everything together was broken- one bolt was holding it together, and only partway. A good jolt or vibration would have left me with no steering at all. And the costs to fix her- if we could get the parts- would be far more than she was worth. And she would still be a 33-year-old car. So with heavy hearts, we donated her to the Humane Society. Wanda got a tax credit, and hopefully someone else will be able to get some use out of her.

That was in November. Then in the first week of December, I had a doctor appointment in Beaverton, and I borrowed Wanda's truck to get there and back. I was exhausted- Lydia and the girls had just gone home from Thanksgiving, and I was still exhausted. I love them to bits, but the girls really take it out of me, and I was completely out of spoons. I fell asleep at the wheel, drifted, and hit two parked cars. I was ok- one scrape, but the truck was totaled. I cannot possibly express how awful I felt about that. (Still do.) And it left us without wheels.

So Wanda dipped into an account (oh, I really felt bad about that!) and bought a little car for herself- a 2013 Toyota Yaris. Very cute little thing, silver, and she named it K-9 after the 'tin dog' in  Doctor Who. Then we got me a used Volvo wagon, 1998, with half the miles of Zippy. Gas, not diesel. Sort of a rose bronze color. I stuck an 'Allons-Y!' sticker on the back, and named it Alonso, so I can say "Allons-Y, Alonso!" Yes, I am a geek.

Lots of money spent, in large part my fault.

The doctor's appointment I was returning from when I wrecked the truck was a gynecological oncologist, specialty surgeon. I'd been having some weirdness, and my gynecologist determined that the endometriosis had returned. With a vengeance- I had a good-sized mass. She decided that she wasn't comfortable doing the laproscopy herself, as it looked like it was going to be pretty involved, and a specialist would be safer. (The oncologist later told me that the gyn was a rockstar for referring me to him- there was no way she would have been able to do it, and she would have had to back out and call him in anyway.)

So I had a robotic laproscopy. They took out a large mass, the size of my fist. There were a number of smaller masses, and further 'flecks' of the endometriosis all over. The surgeon said that it looked like a bomb had gone off. They had some difficulty getting the big mass loose- it was wrapped over the ureter on that side. They eventually got it loose. They also had to re-open the vaginal cuff (where my cervix used to be) to get one of the small masses out, and so that was re-sectioned and resewn. In all, the surgery was difficult- he says he'd rather dig out cancer than deal with endometriosis- cancer is a lot easier. And it took about twice as long as they'd thought. But the biopsies came back clean.

That was the 10th of December. Recovery has been difficult- a lot longer than I'd thought, and more painful. I'm just now getting on my feet, and they said it will be about May before I'm really back to normal. Joy.

Now just to make things really fun, I developed some serious pain at the back of my neck and down my left arm. I realized it wasn't going away, and Sharon Rose (massage therapist), who is also a rockstar, told me something was wrong and I needed to see my doctor. So I went in. My doctor was booked, so I saw the intern, who thought it was a bad rotator cuff. I went to Twelfth Night that weekend, and was miserable- couldn't dress by myself, was on pain meds, slept through the court I wanted to be at, and missed a lot of the event. (Did see Phil and Annie though, and that was nice, :- ) I went back to the doctor that Monday, as it became clear that it was not the rotator cuff when the pain started going to the right arm also, and my hand started having intermittent numb spells. They decided that it was a bad disk in my neck and sent me for an MRI. That showed a bulging disk and inflammation, but the person reading it didn't think that it was bulging enough to cause a problem. Well, I beg to differ!. He may not think so, but my body sure does! So back to the doctor I go. They want to send me to the pain clinic, but I think that is really just palliative, and I really want to fix what's wrong. I'm not sure how persuasive I can be.

I did discover that a somewhat contentious Laurel meeting isn't so bad if you're on hefty pain meds. Need t remember that. :-) )

So basically I'm living on pain meds, watching the clock, and having to do without if I have to drive or otherwise be awake. It sucks. It's no way to live. And very depressing. Very, very depressing.

I took the twins to the ball Friday night at Twelfth Night. Made them little Italian Ren outfits- pint bengaline with bows down the sleeves. They were too cute for words. Unfortunately, Lydia and I were so busy with child management that we forgot to take pictures! And it seems that no one else got any either. But they had fun dancing, and they got to meet the king. He was very sweet to them, and I think they will remember it.

 Next month, over Valentine's Day weekend, James and I are going to the coast for the weekend, by ourselves. No events, no meetings, no 'honey-do' projects, just time for us. I can hardly wait. I'm really hoping that the streak of bad luck is over before then. I really need a break.

Update from July Coronation-

I just want to put up a few pictures of Ursel's elevation clothes here, partly because I can't get them to load into the files at the 12th c Garb Yahoo Group...

Over her linen chemise was a gown of palest green silk (think light celery green), with long tight sleeves that ruched up. Over that was a gown of green brocade, cut in the manner of the Germans (basically like the clothes in teh pictures in the Gospels of Henry the Lion of Saxony. The yoke and a band around the hem were done in a lovely peacock blue silk, which also lined the maunche sleeves. Laurel leaves were appliqued around the yoke.

On to the pictures!

 The yoke, with narrow trim and appliqued leaves.














Not so great picture of the hanging gown- the color is sort of off there- should be much warmer.

And several shots of Ursel, during and after the ceremony-

 

I haven't been able to find a full-length shot of her- if I get one, I'll post it.

The New Doctor?

So, I did it. I called Care Oregon and arranged to transfer clinics. I looked on their website and found a doctor there who's a likely suspect.

 

• Specialty: Internal Medicine

Clinical Interests: Cardiovascular Disease, Chronic Kidney Disease, Diabetes Care, Hypertension, Thyroid Disease  

"I believe in a holistic approach to patient care - emphasizing the role of social, mental, and environmental factors influencing health and wellbeing."

This has distinct possibilities. He specializes in several things that are major issues for me, and he's an internist, so he's more likely do have the background to offer the close attention my problems need.

He's Indian, has been here since 2003. I don't know if there might be communication problems; on the other hand I think I might be better than most at handling them if they arise.

So I'm meeting him for a new patient appointment on the 24th. I suppose I'll see then if he's a good fit.

In the meantime, I saw a Gynecological specialist Friday about the bleeding issues. She had some labs taken, and she's going to consult with some colleagues. She said we might need to do a biopsy and/or excision. There is a nodule, possibly just scar tissue, but possible a recurrence of the endometriosis. 

And according to her, I should have been getting progestrone as well as estrogen, to keep the endometriosis down, but I haven't been. Less than happy about that.

So life could be interesting medically for awhile. When hasn't it been?

Any guesses as to how very tired I am of all this?


In other news, it has been HOT. Lay-around-and-sweat hot. Naturally, I have a deadline and am spending a lot of time in the studio, which is naturally in the attic. We have window unit A/C, but it is still pretty oppressive. And I HAVE TO finish this stuff...

It's going to be FABULOUS though. I might get some pictures later today and put them up. My phone gets lousy color, but I think enough should come through to offer an idea of what it looks like. I'm pretty happy.

So it's back to my iced tea, and upstairs to work. I have no fingerprints- the handwork has erased them. As James would say, time to rob a bank!

The Non-Writing Life

Just to add to the guilt of the day/week/month/years... Three writing projects on the hard drive, in various stages of production. One of them up to about 30k words. And they feel good. But why can't I summon up the self-discipline to get any work done? It occurs to me that the oomph probably went the same place that the sewing energy went. Maybe the depression? About all I can do is sleep and watch videos. And do doctors stuff.

Bugger.

Need a Doctor!

Yes, I've been watching Doctor Who again. Went through a bunch of the old ones (I think Tom Baker was AWESOME), and then the reboot. I'm down to Tennant's last two episodes, and almost hate to watch them, because I hate to see him go. He was so...  he so caught the spirit of the Doctor. Mercurial- lighthearted one moment, deadly serious the next,ebullient, or deeply introspective...

And damn sexy to boot! I think it's the eyes. And the maniacal grin. (Yes, I'm besotted.)


In other news though, I'm shopping for a new Primary Care Physician. I've been with Judy Becher for 14 years or so, and in general have been happy with her. She's a good doctor in general, a solid GP. The problem is, I'm not ordinary. I think she's out of her depth, dealing with someone who has multiple, interlinked problems, and chronic diseases. She's let things slip that should have been attended to, and stuff happened. For instance, my creatinine levels were elevated for quite some time, and nothing was done- in fact, I didn't even know about it until my rheumatologist said something. Now I have Chronic Kidney Disease. I asked the nephrologist the other day, point blank, if the creatinine levels had been addressed when they first went up, or even as late as a year ago, would I be seeing her now? And she said flatly No.

Well now.

It turns out my platelet levels have been up, to Bad levels, for quite some time. I'm having weird bruising issues. Trying to get a referral to see a hematologist. So far (ten days after dr visit) nothing is forthcoming. And after a terrifying and weird bleeding incident (I had a hysterectomy 20 years ago- so why was I bleeding?), I was told I'd get a referral to a GYN specialist. Nothing happening there either.

Needless to say, I'm not happy.

I called Care Oregon Monday and asked about how to get a new PCP. Got suggestions and some names to look into. So I get to doctor shop.

I'd much rather just get David Tennant to be my doctor!

***

So, the new pavilion was built- and turned out great! I was biting my nails as we put in up, but it worked perfectly. I haven't had a chance yet to paint the poles, or add the painted borders, but I will. Then it will look even cooler.

The internal curtain worked well too, though it was a bit dark inside. However, it kept the bed area quite cool,which was really nice. And gave us a tiny bit more privacy.

David and Lydia and the twins came out for a day trip that Saturday. They had a blast- especially the girls, who had a chance to run around in the grass, and chase Tadhg and Morrghan's boys. Sadly, I didn't get pictures.

We had a birthday party for James, who turned 50 on May 16th. I'm having a hard time thinking of him as 50, until I see the silver in his hair (the result of working with middle-schoolers, certainly). And then I look in my mirror...

I'm working on clothes for Ursel, who is being elevated to the Laurel at July Coronation. I'm also doing vigil baths for she and Suvia both. It will be a busy weekend!

***

Ok, lest you think that all I do is hang out online (I have got to remember the close the Facebook tab instead of leaving it open), I actually have been working. Have stuff going upstairs, when I'm up to moving about. Otherwise, reading, and writing.

Current reading:

_Charlemagne's Courtier: The Complete Einhard_, edited and translated by Paul Edward Dutton.(Broadview Press, Ontario, Canada, 1998) (Just finished this, in fact)

_The Carolingian World_, Marios Costambeys, Matthew Innes, and Simon Maclean,(Cambridge University Press, Cambridge, UK, 2011)

_Carolingian Portraits: A Study in the Ninth Century_ Eleanor Shiple Ducett. (University of Michigan Press, Ann Arbor Michigan, 1988)

_Franks, Burgundians, and Aquitanians and the Royal Coronation Ceremony in France_ Elizabeth R. A. Brown; Transaction of the American Philosophical Society, Volume 82 part 7. (The American Philosophical Society, Philadelphia, Pennsylvania, 1992)

_Lex Salica: The Ten Texts With the Glosses and the Lex Emendata_, J. H. Hessels, H. Kern, eds. (Elibron Classics, London, UK, 1880)

No fiction, except for the stories in the New Yorker (just finished the summer fiction issue and my head is in a really weird place). Maybe later in the summer.

In my copious spare time, of course. 

Struggles Past and Ongoing...

Ok, it's a fair cop.

Earlier last night I finished watching Stephen Fry's two-part thing 'The Secret Life of a Manic Depressive'. And it shook me up a bit. Well, maybe more than a bit.

I was diagnosed when I was at school. '95 or therebouts. Got on the medication merry-go-round then because I had to, just to cope with daily life. It's been a wild ride since.

Mostly I struggle with the depressive end of it. I'm Type 2, so the ride isn't as bad as it could be, but it's still seriously unfun. I managed to get through for quite some time, mostly by sheer force of will, but not long after a traumatic breakup, in fall of '98, I had an abrupt manic cycle, and a subsequent crash. The breakdown, hit hard, and I never really recovered. It completely torpedoed my academic career.

I'm still struggling, 15 years later. I've gotten pretty good at recognizing the up cycles- they terrify me and I do everything I can to even them out, but the fact remains that underneath it all, the depression has never really ebbed. If you poke me just about any day, I'll likely say that I'm about a 3, on a scale of 1-10.

I'm having to deal with other medical issues too- the fibromyalgia, cardiac stuff, chronic asthma, thyroid problems, arthritis, high blood pressure, and now, chronic kidney disease, in part the result of the meds I've had to take to treat the manic-depression. I'm on a rather frightening amount of meds, which I have to be very careful to take at the right times, in the right ways.

Really, it's not a pleasant way to live.

Stephen remarks at one point in the film, after admitting to more than one suicide attempt, that he realizes that he really doesn't want to kill himself, he just wants to be dead. I can identify with that- but I don't really want to die- I have a lot to lie for- a man I adore, children I love dearly, and granddaughters, friends I care for deeply, a church and social life that means a great deal to me. But I will admit that there are times that I wish I could just go to sleep and stay that way. I've been in a lot of pain in a lot of different directions. I can't take basic analgesics anymore, and the heavier stuff makes me groggy and morose. The anti-depressants don't help that much, and the side effects aren't worth it. And we're having to scale back- and probably drop- the lithium, because of the kidney issues. So I'm kind of stuck.

I'm not functioning very well right now. Just sort of 'getting by'. And barely that. I can't seem to force myself to write, which is frustrating, because that is good for me. I have craft and sewing projects that are years behind. I bite my nails till they bleed. I've found myself pulling at my hair again (doesn't help thaqt the white is a different texture and it drives me nuts). I can't hold a job. Getting to church Sundays sometimes takes herculean effort. About all I feel like doing is sitting here, watching QI reruns, a bit of Netflix, hanging out on Facebook, reading email. I try to get down to see Teh Girlieez once a month or so, but that saps my energy so badly I usually end up sleeping for days afterwards.

Sleep is a problem. Either I sleep too much (exacerbated by fibro and arthritis flareups) or I can't sleep, like now. I feel like a zombie, and I know it doesn't help AT ALL.

Seeing the pain that Stephen deals with- and the people he interviewed- really woke me up to the state I'm really in. I'd been telling myself I'm 'well managed'. I'm not. Time I was honest about it.

At the moment, I don't know what to do about it. The meds aren't cutting it. Therapy doesn't really change anything. It feels good to watch cartoons, or QI, or Doctor Who, or the Marx Brothers, but the warm fuzzy doesn't really last.

I really not trying to whine, or attention-seeking. Really. Just trying to be honest. But I have to say, I don't know where I'd be without my loved ones. And I don't know that I'd survive without the medical care I've got. And I have to say, in no uncertain terms, that if any of you feel similarly, GET HELP.

I may never 'get better'. This may be good as it gets. But I figure that every day I spend above ground is a good day, and that's something. For now, it will have to do.

Not another...

You know, there are times I feel like the universe is using me for target practice. This is one of those times.

My primary care physician sent me to see a rheumatologist, because the fibromyalgia pain, coupled with the arthritis pain, has gotten out of hand. I've been taking aleve and ibuprofen by the handful, with not enough relief, and for some reason she won't prescribe anything stronger. (I think this partly may be because of oversight by OHP, or simply something of profiling, as I live in a maybe not-so-good neighborhood, etc.)

So I went off to see the rheumatologist. She poked around, made frowny faces at my joints, and at my chart, but was visibly upset about the NSAID use. And apparently my creatinine levels are too high, which indicates kidney stress. So she told me to drop the NSAIDs, cold, and fill in with tylenol until we can track down the kidney issue. This does not please me, because if tylenol would do it, I wouldn't be taking the high doses of NSAIDs. And she sent me for more labs.

The next labs were no better. And my right knee (the bad one) and hands are pretty bad. So we took xrays, more labs, and she sent me back to my primary care to get a referral to a nephrologist.

Back to Dr Becher. She didn't seem to be terribly exercised about the kidney stuff, but took yet more labs and put in for a referral to a nephrologist. That was Friday.

Monday I get a call from her nurse. The Friday labs did more testing than just the creatinine. They were bad. The official words are Chronic Kidney Disease. They're fast-tracking the referral, and they gave me a sheaf of info- mostly new diet stuff- to go through while waiting for the nephrology appointment.

Interestingly, a fair proportion of the stuff in the diet recommendations, etc, are directly opposed to diet recommendations I have to follow to deal with my meds, mostly the bi-polar meds, and those are not negotiable. And the potassium is a problem.    This could be interesting, trying to balance all of this. The bi-polar stuff is not negotiable. But my kidneys are also very important.

(bang head on desk)

So we wait and see what the nephrologist has to say.


In other news, Phil and Annie went to 12th Night with me, which was great fun. Phil even enjoyed court, which was unexpected. They are getting tucked in to the Madrone scene, and it helps that they got involved with Pembroke and his household right away. And they are both in armor, which is cool! Phil is enjoying himself, but Annie is loving it, and she's decided that she really wants to be a knight! That is cool as all get out.  :-D

Church is good. I don't know if we have the stove issue resolved yet. Annual meeting is Sunday, but there's supposed to be 6" of snow on the ground.

And my hair is still a wreck. Bah. Rain, I said! Now snow!

Dry, dry, dry, dry, dry...

Ok, this is not actually me. But that is pretty much what my hair looks like these days.

It's not far off of that normally, but our weather has been really dry of late (yup, no rain in Portland), so it's even worse. If I leave it completely alone after washing ti- no combing, just towel dry and fluff it- it has ringlets for about half of the day. And then it gets fuzzy. If I use the hairbrush on it, it is even worse. I look like Roseanne Roseannadanna. .(Yes, I know I'f dating myself there.) Or worse, Cousin it.

Leaving the conditioner on longer than usual makes it floppy, but still frizzy. (and I don't get the ringlets at all.) Product makes it crunchy and frizzy.

So mostly I wear it pulled up with a big clip, or wind it into a chignon, or braid it. Bah.

There are days I'm tempted to shave it off.

Pray for rain.


It's not just my hair. My sinuses and the inside of my nose are really dry, and one side of my nose cracks and bleeds, so I get nosebleeds. Not fun. I keep putting lotion in it (the thick Nivea stuff that comes in a canister), and I got myself a wee crockpot to put a little moisture into the air, but it seems that it is not enough. And my throat is sore, same reason.

Pray for rain.


Oddly enough. our hyacinths are coming up already. In January. The greens are already about a foot tall. I worry a bit about them, as it's been really cold (26F at the moment- cold for Portland) but they seem to be ok.


In other news though, I'm not doing so good. I was in to see the rheumatologist on Friday, and she was not happy. My last labs came in with elevated creatinine, which means I have a problem with my kidneys, most likely due to the ibuprofen and naproxen I've been taking. Well, as I told her, I'm taking scads of it because I'm fucking desperate. My pain levels have been way up, and unmanaged pain just feeds the inflammatory process, which snowballs. So we took more labs, and some xrays of my hands and knees, which are inflamed at the moment. I'm actually hoping to get neck and back done too- I know there's problems there, and I want to see what we can do, if anything.

So we've dropped those pain meds completely, which means I'm in a LOT of pain right now. She wants me to take Tylenol, specifi doses and times, to see if that helps. Well, Tylenol has never done anything for me before, and it isn't now. But I'm suppose to give it a couple of weeks. Bah. My hands really hurt, and my feet are flared up- feels like I'm walking on rocks.

I have to admit I'm worried about the kidney issue. That could be really bad.


Church has been good. We're still working on getting stuff together for the search for a new priest. For some reason it's really dragging on. This survey, that survey... though I can understand how we're really really trying to make sure that we get a good fit this time.

We got the renovations finished, so at least we won't have to worry about the dry rot on that corner of the roof. Hopefully we'll be able to maintain the building a bit better than has been for the past 10-15 years. We're also looking to refurbish or replace the stove in the parish hall. It really needs work. But somehow that project is dragging on and on and on... it's becoming a standing joke.

Pray for brain.


Valentine's weekend James and I are going to a couples' conference at Good Samaritan in Corvallis. It's basically once of those enrichment things, but I'm hoping it will help us get through some of the communication problems we've been having. I think it will be good for us.

Pray for sane.